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Gene Testing For Siblings?

acousticmom

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acousticmom Explorer
acousticmom
Posted

Help! I'm considering gene testing for our family. Here's why:

>12-yr. old son diagnosed with celiac 12/05

>Rest of the family had negative bloodwork

>Dangerous Grains makes a good case for family gene testing in our situation

>14-yr. son old also has mild asthma more D and C than normal (though it doesn't bother him)

>9-yr. old daughter is tiny (10th percentile), has experienced Alice In Wonderland Syndrome (clustered big/little hallucinations that follow sickness), darkish teeth, and extreme anxiety when overtired.

If the gene tests are positive, Dangerous Grains recommends going gluten-free to be safe. I'm all for that (I went gluten-free to support my celiac son & to see if it helps my fatigue & brain fog--feel much better, will probably stay gluten-free whether tests ever show anything!).

Question #1: Let's say my 14-year old has the gene markers. How on earth would I convince him to stop eating pizza (and everything else with gluten) based on a risk of future problems when he thinks he's fine? I know, that's a rhetorical question, but total compliance would be pretty unlikely. He's generally responsible, but he is a teenager.

Question #2: If the rest of the family goes gluten-free, and has the recommended blood tests every three years, will the blood tests ever show anything if gluten sensitivity does develop?

Question #3: Should I just forget the gene testing, put the kids on a gluten-free diet for a while (how long?) and see if their symptoms are any better? I might be able to convince them to try it for a limited time.

Good thing the gluten-free diet is helping my brain fog--and still, I can't get a handle on all this! I'd love your input!!

Carol

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TCA Contributor
TCA
Posted

My son had inconclusive results, so we did the gene test on him. I was afraid that some family members wouldn't listen to his clinical diagnosis of Celiac if we didn't have some kind of test to prove it to them. He was DQ2 and DQ 8positive from Prometheus. My daughter was a different story. After months of horrible GI issues (VERY long story), I went on a gluten-free diet while she was nursing to see if it would help and it was a miraculous change. I wan't about to put her back on gluten to do testing, so we did the genetic test of her at the same time. She was DQ 2 positive. It was 440.00 each, we found out after the fact. A nice side effect of me going on the diet for her is that I think I may have found a cure for my anemia, joint pain, and irritibility. I never even considered the fact that I may have it, but I feel sooo much better. I would like for my husband and myself to have the test, just because I'm curious, but I'm not 880.00 curious! I feel so much better, I dont want gluten anymore. My hubby is starting the diet next week to see if it helps him. He's Type 1 diabetic and I always suspected it came from him, but now I'm not sure. He had negative bloodwork, but we've learned that diet is a great test, rather than doing so many lab tests. The 3 of us are doing so great on the diet. I hope it helps him too.

acousticmom Explorer
acousticmom
Posted
  • Author
we've learned that diet is a great test, rather than doing so many lab tests.

Thanks, TCA! I think that's what we'll do. Try the diet for a while (I'm thinking 2-3 mos.) and then do a challenge. Regardless, I will probably move toward going completely gluten-free at home for the long haul. I feel so much better gluten-free, and even if the rest of the family doesn't have a problem with gluten, we'll probably eat healthier that way.

Carol

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Out of curiosity, did insurance cover any of the cost of the lab work? I have two kids, 19 and 23, and I don't want them or their (future) children to suffer any of the stuff that I've had to go through recently. I have been told that I HAVE to be gene tested, but no one has made mention of my kids. If it is covered through insurance, the doctor can certainly maintain that it is warranted, but 880.00 is kind of steep for two kids if it isn't right now. The 19 year old is getting married in August (I know she's young, but they're in love, blah blah blah :P -- and actually, he's a really good guy. We like him.)

gf4life Enthusiast
gf4life
Posted

It isn't always covered by insurance. It depends on what insurance you have and if they or your doctor feel it is necessary. My experience was that we have Blue Shield HMO (In CA) and they would not cover ANY of the tests ordered by our doctor for Promethius labs. Since I wasn't willing to pay $750 each for the blood antibody test and the gene tests for all 4 of us I had to pass. Even with the discount they offered for paying up-front with the credit card it was still too pricey.

So we opted to be tested through Enterolab. It is $150 for the gene test and around $400 for the complete stool antibody and gene testing that also includes a casein sensitivity test. You are sent the kit to do at home and mail it back. It was very easy and relatively inexpensive. They also offer a 10% discount when you order for more than one family member (but you have to order at the same time/on the same day). Open Original Shared Link

The nice part about Enterolab is that they also test for the gluten intolerance genes that are not yet considered to cause Celiac disease, but do cause gluten intolerance. You can see the gene break down for me and the kids below. My husband would have to have the same gene combo as my son Jacob in order for the other kids and Jacob to have the genes they have.

TCA,

You already know that both you and your husband carry at least one Celiac gene. For your son to have DQ2 and DQ8, that means he got one from you and one from your husband. So if you feel better off gluten, then it is probably a good thing to stay off it. But you can also be a carrier of the gene and never get sick with the disease. So it is a personal call.

God bless,

Mariann

lamood Newbie
lamood
Posted

Hi there, I am wondering if anyone can answere this. My daughter had inconclusive blood panel, but a negative gene test. She also had c-dif and eosinophilic colitis. Can you still have celiac with negative gene tests? Could you have glutten sensitivity still? Right now her allergist has her off wheat, dairy, tomato and citric acid.

Thanks for any help,

Heather

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